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SRT? No thanks...

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Posted 2/12/2016 11:01 PM (GMT 0)
This has been a tough decision whether to post about this or not. 35 mo.s after surgery, I lost my zero. And since July 2014, it has been slowly rising. Last PSA was Dec 2015 at .108 and I am sure it has risen more since. I debated about posting my decision to pass on SRT because there are so many good people on here fighting that I did not want to upset. And it is sad to see someone post about SRT failure. Or to see a post about the SE's years later. Granted, there are success stories also and I couldn't be happier for them.

However, I have weighed my chances for a cure and don't want to risk the SE's for only a 30% chance of success. I am dealing just fine with the SE's of surgery and understand that at some point I will have to do further treatment. And there is a 70% chance I would of had to continue treatment even after SRT and the possible SE's.

I searched the forum and really couldn't find threads about others who have decided to pass on SRT. I haven't given up on a cure. There are plenty on here that did not even have that option and many seem to be doing just fine with their chosen treatments. I guess I am betting on advances in treatment that will keep me going.
Posted 2/12/2016 11:34 PM (GMT 0)
Passing on SRT is a bold move, but given the odds against that providing a cure, and having my own SRT fail in about 2 1/2 years, I cannot say that your thinking is wrong. You are right, there are lots of approaches available to you, although most include the nasty SE of hormones. I guess the best thing about my SRT was that it pushed off the hormone reckoning day for about four years. Still haven't started hormones yet, but getting close. I have had no SE from SRT, and am grateful for not having to do hormones these past four years. Best wishes!

Newspaper Lover
Gleason 8
Surgery 2009
SRT 2012
PSA emerged again 2015
No treatment yet. Hormones probable when PSA gets to whole numbers. Latest .26.
Posted 2/13/2016 12:13 AM (GMT 0)
SRT is not without risk... it may be small but none the less it can be even more brutal than Pca. I had SRT in 2004 which failed 18 months later, then 9 years after that was dx with rectal cancer...all my docs are convinced it is a direct result of the SRT. I had to have 12 inches of colon removed and a permanent colostomy, then a year later a met to my liver which was resected, now 2 mets in my right lung which will be resected Feb 25th. Also 17 rounds of some very nasty chemo. I know the risk is small but if you lose the consequences are severe. Much thought should go into this.
Posted 2/13/2016 12:35 AM (GMT 0)
It is a tough decision to make, good luck in the future.
Posted 2/13/2016 1:28 AM (GMT 0)
That is a bold decision, but it sounds like you've done your due diligence and weighed all your options. Congrats on doing so and wishing you success!
Posted 2/13/2016 1:56 AM (GMT 0)
I don't think anyone would be upset to hear your decision. It is a very personal decision. We all have different risks we are willing or unwilling to assume. There is no right or wrong, only what is right or wrong for you at this particular point in time. You've done your due diligence, and you're moving forward with your eyes wide open.

- Allen
Posted 2/13/2016 2:10 AM (GMT 0)
My husband, Bob(stats in profile), is facing the same decision. At 14 months post RP, PSA is up to .11 They are recommending SRT. I have done all the research and shared with him (he's not a computer person). As of right now he's still undecided but is leaning toward doing nothing at this point. He is aware if he chooses not to do it at some point he will be on HRT, however, he and I have also had the discussion of possibly new treatments coming forward that could help at some point. Bob has the added risk of a history of ulcerative colitis, which complicates matters even more. He is afraid of the SE's especially considering the failure rate of SRT. (So the risks outweigh the benefits?). Just wanting you to know you aren't the only one making this decision and interested in more insight from other posters. ~Miki
Posted 2/13/2016 2:21 AM (GMT 0)
Miki-

You may be interested in this:

Radiation treatment of men with prostate cancer and inflammatory bowel disease

One RO I spoke to described it as a "myth" that IBD precludes radiation, especially with today's super-accurate machines.

- Allen
Posted 2/13/2016 2:30 AM (GMT 0)
i'd do the radiation in a heartbeat even if it only offered a 10% chance of a cure but I respect your decision not to. good luck!

ed
Posted 2/13/2016 3:37 AM (GMT 0)
Good luck in your decision. Your PSA is very low - probably a very minimal risk by watching the numbers at this stage of the game. I watched the numbers for about 5 years and have just recently decided to pull the trigger on SRT at a PSA of 0.66. Mine started rising in 2009 after undergoing a RP in 2005.
Admittedly, I am very concerned about the possible side effects...especially the long term or late effects such as secondary tumors. I am starting SRT Monday, 2/15/2016. I need to update my profile. lol
Posted 2/13/2016 4:37 AM (GMT 0)
Star tech, as others have said, a bold move indeed. I think it takes a lot of courage to make the decision you are making, I have much respect for what you are doing, I hope and pray that it works out for you.
Posted 2/13/2016 4:54 AM (GMT 0)
Startech how I wish there was no question about what road to take with PC. You have to do what is best for you. Weighing all the pros and cons I made the decision on surgery and then SRT. The only regret I have is that I got cancer unfortunately that's the one thing I didn't get to choose. Good luck on the path you have chosen.
Posted 2/13/2016 5:00 AM (GMT 0)
Miki - I am one who has ulcerative colitis and did SRT. No additional symptoms due to the SRT. Symptoms were well controlled prior to SRT but I was worried that it would bring on complications. I did not even have temporary colon-related symptoms.

Startech, I wish you well with your decision - and it is yours to make -- feel no regrets.

I am not speaking from a point of knowledge, but I do not know of a reason why you could not opt for SRT in the future if you change your mind - it just might have a lower likelihood than now. I haven't yet had the "joy" of HT, but I expect it is in my future. Like others, I am pretty sure the SRT delayed my need for the HT if nothing else.

Jeff
Posted 2/13/2016 5:11 AM (GMT 0)
Thanks everyone for your responses. They mean a lot to me. I have requested my PCP put in a request for the Decipher test. There seems to be a question if I will be covered while my PSA is under .2. I should have some more on this next week. I don't know how I will use the results, but I think the more info I have, the better. I will also ask my PCP what the best scans are available in my area and if I should have any scans.

Tall Allen-if you know of any trials or surveys that might benefit from my situation, please let me know.

TaurusBull-We all have to decide our own path and I wish you the best outcome with SRT. I will review some of your post about Advodart in the morning when I am not so tired.

F8-Well said, thanks.

I see everyone is on top of their situation and wish nothing but the best. Keep fighting! I am, just a different way.
Posted 2/13/2016 6:46 AM (GMT 0)
I haven't seen many clinical trials for men in your situation (non-metastatic, hormone-naive, recurrent yrs after surgery). When your PSA reaches 0.8, you may qualify for the NIH trial of ProstvacVF:

Prostvac in Patients With Biochemically Recurrent Prostate Cancer

There are a few trials for early detection of metastases after your PSA has reached 0.2, although I'm not sure what you'd do with the results. There are others that want you to consent to salvage radiation.

/clinicaltrials.gov/ct2/show/NCT02523924
/clinicaltrials.gov/ct2/show/NCT02624518
/clinicaltrials.gov/ct2/show/NCT01967862

- Allen
Posted 2/13/2016 10:30 AM (GMT 0)
Startech -

If you don't have my phone #, ask Sonny or email me. RT is more than a double edged sword. Maybe three or four edges. I am dealing with treatments to fix the SEs of RT every day. Literally every day. My current objective is to save my RT damaged bladder. I don't want a bag, but the odds for the bag are winning.

When they say radiation is the gift that keeps on giving, it is not a kind joke. It is a kind way of handing you the ugly news.
Posted 2/13/2016 2:56 PM (GMT 0)
Have you had a consult with a Medical Oncologist ?

My DEC-2015 PSA was 0.08, retest at end of March.
Had a consult with a Radiation Oncologist affiliated with MD Anderson @ Cooper.
If my PSA continues to rise he recommended a consult with a certain (in his words a very good Dr) Medical Oncologist.

The take-a-away from the consult was not to pursue radiation at this time, and to look at other options. He said if I was much older, and had other health issues he would view it differently. He said he is looking at someone who possibly has decades ahead of him (58 years old) no side effects from surgery, no ED, no incontinence, no bowel issues, no other health issues known, perfectly healthy (other than PCa) and a micro rise in PSA almost 5 years later.

I guess the risk is higher if you have more at stake. His recommended course of action is to monitor PSA, if continues to rise, 3 coil MRI to identify any questionable area, biopsy it to identify as cancer or benign. If cancer, pursue Medical Oncologist for treatment plan. He said Medical Oncology is having breakthroughs with DNA BIO stuff ? ( no idea, he used 50 point scrabble words TA uses). He said there's a great possibility that before my PSA becomes an issue, and if identified as cancer, there will be new treatment options.
Posted 2/13/2016 3:39 PM (GMT 0)
Hello Sagittarian, good to hear from you. That is very uncommon for a RO to make that recommendation. Although I find it encouraging for my situation, I am wondering a couple of things about your situation. Your RP outcome seems to of been very favorable with no SE's, other than the loss of your zero. Also, your post op path seems to be way more favorable with only 25% G7 and really no other high risk factors. Have you put your info in any of the nonograms to see what your chances of a cure are after SRT? I would think you would have a much better chance of a cure than I, maybe better than 50%. That information alone may make it harder for you to skip SRT. You may also want to take a look at the Decipher test (DNA BIO stuff)to see what your chances are for metastasis before you make any final decisions.

Believe me, I understand anyone's reluctance to do SRT and you have to make the decision for your own circumstances. Like TA said, there is no wrong or right decision. We will support you no matter, but point out facts to help with your decision.

One of the reasons I debated starting this thread is because I know how hard it is to agree to SRT and the last thing I want to do, is see someone who has a good chance for a cure, pass on that opportunity.

I have not yet found a MO and am just now researching how to do that.

Post Edited (Startech) : 2/13/2016 8:44:53 AM (GMT-7)

Posted 2/13/2016 3:41 PM (GMT 0)
I just looked at your sig again and noticed how slow your psa is rising. The RO made a good call.
Posted 2/13/2016 4:12 PM (GMT 0)
Hey Startech:

Yea, didn't expect that course of action. Thought I would be scheduled for a zapping.
Then again, MD Anderson's approach is to get everyone involved, those who cut, zap, inject, get you to swallow things, to come up with a plan best suited for the individual. He also said, PSA could be generated from the prostate area (cancerous or prostate tissue left behind) or a remote area.

Many debates over Surgery vs Radiation, it's not that simple. Many variables and no one shoe fits all. Radiation has its place, just not for me at this time. MSKCC Namogram calculations are based on PSA's passed .1. Not a good idea to make up my own ultra sensitive PSA test doubling time calculation. Decipher test is on my radar.

I totally understand and respect your decision to look at other avenues other than radiation.

Hey wait a minute buddy, give me my card back,
I'm still below .1 (<.1) and still a zero club member, unless there's new rules ?
Posted 2/13/2016 4:18 PM (GMT 0)
142:

Can you elaborate on the bladder issues. I had a one time macro bleed. I know I was constipated at the time and I was straining. It was a scary event. I started drinking a lot of water that day and it ended up clearing completely. I suspect the SRT 5 years earlier caused it.

Urologist wants to scope me. Dr. King says no need; I blew a blood vessel. Dr. Lam figures 95% probability it's nothing. There;s also a chance the scope could create more issues.

So, if you don't mind, can you give us more details?

Mel
Posted 2/13/2016 5:39 PM (GMT 0)
Very interesting thread indeed! Secondary cancers are mentioned, but I suppose the risks of that are much lower recently, due to advances in precision when dispensing RT?
Posted 2/14/2016 3:46 AM (GMT 0)
My RO told me I had a 2% risk of secondary cancers due to the SRT.
Jeff
Posted 2/14/2016 5:56 PM (GMT 0)
Sagittarian-I am the last guy in the world who would want to take someone's 0 card. My bad, sorry. But there are some that would start secondary treatment at .03 or .05. As you know, I didn't! Have you looked at Avodart? Supposedly if your PSA falls, it indicates benign prostate tissue. I am looking in to this myself.

All-Secondary cancers are only part of my concern. It's the SE's and the possibility of QOL declines that bug me the most.
Posted 2/15/2016 11:02 AM (GMT 0)
OK, great I got my card back.
If the next Prostate Stress Anxiety test hits or passes .1 I'll surrender my card :>

I will mention Avodart to my Urologist when PSA is checked.
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